Thursday, December 18, 2014

Breaking News - NYS Bill Signed into Law - Chapter 532

This letter from a Lyme activist in NY is in reference to the bill that just passed NY State legislature in support of ILADS standard of care for NY citizens who have Lyme disease and desire long-term antibiotic treatment. (See post earlier today.)


To All,
The memo will be issued and the chapter amendment may or may not be available until Jan. We were told that we will be very happy, it is strong! 
It was our ability to work together that we were able to educate the NYS government to the dire need for sick people to be treated as individuals, especially when the science on persistence of borreliosis (Lyme and other borrelia) is not settled. 
Our NYS Coalition on Lyme and Tickborne diseases worked with Support Groups, patients, reporters, researchers, scientists, physicians, state and federal reprersentatives and others. It is with great thanks to ALL OF YOU for your support, letters, calls and whatever you did to help.We are powerful together and we made a difference! Give yourselves a round of applause.
Way too many people  have suffered needlessly. The limited number of physicians who were willing to treat us with compassion, were those who had the most difficult complicated cases; the discards of other physicians. They are the ones with the experience, knowledge and skill who risked their very licenses to give so many their lives back again and reduce illness. Yet they were constantly harassed by unwarranted, costly investigations by the NYS Office of Professional Medical  Conduct. Understandably this had a chilling effect on other doctors willingness to treat patients as individuals beyond the 2-4 week outdated IDSA Guideline.
It is unconscionable, in the light of this that sick people have been turned away and allowed to suffer endlessly without hope. Some Tickborne disease patients even died from lack of medical care. Two I know about within 10 miles of my home are a 17 year old, and a mother; they both are in their graves. Let this be a turning point!
 NYS, the Empire State, is putting a line in the sand to say, that's enough!

Dietary Supplements Containing Live Bacteria or Yeast in Immunocompromised Persons: Warning - Risk of Invasive Fungal Disease

Safety Alerts for Human Medical Products 

Here is the content from another source.  It was not the bacteria intended to be in the product that was the problem, but rather a contaminant.  However, the FDA is saying new product application wanted.  Does this mean they are going to be regulating probiotics???
Dietary Supplements Containing Live Bacteria or Yeast in Immunocompromised Persons: Warning - Risk of Invasive Fungal Disease
December 9, 2014

Audience: Health Professional, Pediatrics , Internal Medicine, Consumer

[Posted 12/09/2014]

ISSUE: FDA is warning health professionals of the risks associated with the regarding use of dietary supplements containing live bacteria or yeast in immunocompromised persons. A premature infant administered a dietary supplement, ABC Dophilus Powder (Solgar), as part of in-hospital course of treatment, developed gastrointestinal mucormycosis caused by the mold Rhizopus oryzae and died. Rhizopus oryzae mold was found to be present as a contaminant in an unopened container of the ABC Dophilus Powder, which is formulated to contain three species of live bacteria.

FDA, along with the Centers for Disease Control and Prevention (CDC) and the Connecticut Department of Public Health, are investigating the death of this preterm infant who developed gastrointestinal mucormycosis.  In mid-November, Solgar issued a recall for certain lots of ABC Dophilus Powder and public health warnings were issued advising customers and consumers not to use the recalled product.

FDA is informing healthcare providers that dietary supplements, including those that are formulated to contain live bacteria or yeast, are generally not regulated as drugs by the FDA.  As such, these products are not subject to FDA's premarket review or approval requirements for safety and effectiveness, nor to the agency's rigorous manufacturing and testing standards for drugs, including testing for extraneous organisms.

BACKGROUND: FDA is warning health professionals of the potential risks associated with the use of dietary supplements containing live bacteria or yeast in immunocompromised persons. Gastrointestinal mucormycosis primarily occurs in immunocompromised persons, such as prematurely born infants.

RECOMMENDATION: FDA advises practitioners to approach the application of these interventions with caution. FDA encourages health care providers who use dietary supplements containing live bacteria or yeast as drugs (e.g., to treat, mitigate, cure, or prevent a disease or condition) to submit an Investigational New Drug Application (IND) for FDA review

Health care providers and consumers are encouraged to report adverse events following use of dietary supplements both to the manufacturer using the address or phone number which is required to be on the product label and to the FDA. Visit to submit a report online, or call 1-800-FDA-1088.

[12/09/2014 - Dear Healthcare Provider Letter - FDA]

NY State Passes New Law on Antibiotics

December 18, 2014

Doctors who prescribe longer courses of antibiotic treatments for Lyme disease have new protections under state law today.

Gov. Andrew Cuomo signed a bill late Wednesday that prohibits the state Office of Professional Medical Conduct from investigating a licensed physician based solely upon the recommendation or provision of a treatment that is not universally accepted by the medical profession.

Full story



NY Governor has Signed the Lyme Bill !!

This is fantastic news for New York residents! It also sets a precedent for other states.  



Governor Cuomo signed the Patients' Rights/ Doctor Protection bill this evening (12/17/14)!  The bill provides that the OPMC may not charge a physician or other medical licensee with misconduct solely for recommending or providing treatments that are not universally accepted by the medical profession, including, but not limited to, treatments for Lyme disease.

This law has been a long time in coming, but it's done!  There may be some technical tweaks, but we are assured that they do not alter the intent of the bills that were unanimously passed in both Senate and Assembly.

THANK YOU TO EVERY ONE OF YOU WHO CONTACTED (and recontacted) THE GOVERNOR'S OFFICE!!  That effort made the difference!  Thousands of Lyme victims told their stories and the legislative staffers and Governor Cuomo's staff, none of whom really knew much about Lyme to start with, now know more than they ever thought possible. And they now understand what the fuss is all about. This would not have happened without you all.  Pat yourselves on the back -- this is YOUR law.

Feel free to send a note of thanks to Governor Cuomo, Senator Kemp Hannon, Assemblywoman Didi Barrett, and Assemblyman Richard Gottfried for their dedication to this cause.  

We will send more details as they become available.

Best regards to everyone!

Chris Fisk
Lyme Action Network

Friday, December 12, 2014

Damage of Collagen and Elastic Fibres by Borrelia Burgdorferi - Known and New Clinical and Histopathological Aspects

In the last year or so I have noticed a rapid loss of elasticity in my own skin. Coincident with this, I had a positive culture test result from Advanced Laboratory Services for Borrelia meaning that even after years of antibiotic therapy both oral and intravenous, I still have active Borrelia in my blood. Over the ten or so years of my reading about Lyme disease and related conditions, I've seen references in the literature about Bartonella affecting skin. However, those have mostly been about degradation or destruction of surface capillaries visible in the skin.  I've had plenty of that as well in the last year. This paper addresses the issue of loss of elasticity and collagen of the skin as a result of infection by Borrelia rather than Bartonella. Specifically, it references loss of collagen as well as connective soft tissues such as tendons and ligaments and even the dislocation of the spinal vertebrae that can result when critical connective tissues begin to lose strength. - Bob

Damage of Collagen and Elastic Fibres by Borrelia Burgdorferi - Known and New Clinical and Histopathological Aspects

Muller, KE. Damage of Collagen and Elastic Fibres by Borrelia Burgdorferi – Known and New Clinical and Histopathological Aspects.
Open Neurol J. 2012; 6: 179–186.
Lyme Borreliosis, or Lyme disease, manifests itself in numerous skin conditions. Therapeutic intervention should be initiated as soon as a clinical diagnosis of erythema migrans is made. The histopathology of some of the skin conditions associated with Lyme Borreliosis is characterised by structural changes to collagen, and sometimes also elastic fibres. These conditions include morphea, lichen sclerosus et atrophicus and acrodermatitis chronica atrophicans. More recently, further skin conditions have been identified by the new microscopic investigation technique of focus floating microscopy: granuloma annulare, necrobiosis lipoidica, necrobiotic xanthogranuloma, erythema annulare centrifugum, interstitial granulomatous dermatitis, cutaneous sarcoidosis and lymphocytic infiltration; these conditions also sometimes cause changes in the connective tissue. In the case of ligaments and tendons, collagen and elastic fibres predominate structurally. They are also the structures that are targeted by Borrelia. The resultant functional disorders have previously only rarely been associated with Borreliosis in clinical practice. Ligamentopathies and tendinopathies, spontaneous ruptures of tendons after slight strain, dislocation of vertebrae and an accumulation of prolapsed intervertebral discs as well as ossification of tendon insertions can be viewed in this light.

Thursday, December 11, 2014

Update on persistent symptoms associated with Lyme disease. - PubMed - NCBI

If you like reading medical studies or abstracts (much easier to read the abstracts, IMHO, but you can miss the nuances in the detailed publication if you do), here's an interesting/annoying one supposedly proving that Lyme bacteria do not persist in the human body after basic treatment with oral antibiotics. Of course, this topic is THE pivotal argument going on between the IDSA and ILADS docs and researchers. There are other areas of contention, yes, but this argument determines health insurance company policy, standards of care that affect virtually anyone diagnosed with Lyme, and especially chronic Lyme. A study such as this can truly have life-or-death consequences for those of us living with chronic Lyme disease. 

-Bob Cowart

Curr Opin Pediatr. 2014 Dec 7. [Epub ahead of print]
Update on persistent symptoms associated with Lyme disease.
Oliveira CR, Shapiro ED.

Curr Opin Pediatr. 2014 Dec 7. [Epub ahead of print]

Update on persistent symptoms associated with Lyme disease.

Oliveira CR1, Shapiro ED.

Author information


Lyme disease, caused by Borrelia burgdorferi, is the most common 
vector-borne illness in the United States. The pathogenesis, ecology, 
and epidemiology of Lyme disease have been well described, and 
antimicrobial treatment is very effective. There has been controversy 
about whether infection can persist and cause chronic symptoms despite 
treatment with antimicrobials. This review summarizes recent studies 
that have addressed this issue.


The pathogenesis of persistent nonspecific symptoms in patients who were 
treated for Lyme disease is poorly understood, and the validity of 
results of attempts to demonstrate persistent infection with B. 
burgdorferi has not been established. One study attempted to use 
xenodiagnosis to detect B. burgdorferi in patients who have been treated 
for Lyme disease. Another study assessed whether repeated episodes of 
erythema migrans were due to the same or different strains of B. 
burgdorferi. A possible cause of persistent arthritis in some treated 
patients is slow clearance of nonviable organisms that may lead to 
prolonged inflammation. The results of all of these studies continue to 
provide evidence that viable B. burgdorferi do not persist in patients 
who receive conventional antimicrobial treatment for Lyme disease.


Patients with persistent symptoms possibly associated with Lyme disease 
often provide a challenge for clinicians. Recent studies have provided 
additional evidence that viable B. burgdorferi do not persist after 
conventional treatment with antimicrobials, indicating that ongoing 
symptoms in patients who received conventional treatment for Lyme 
disease should not be attributed to persistent active infection.


     [PubMed - as supplied by publisher]

Response to the study, by Carl Tuttle,  US-based Lyme activist, challenging the accuracy of the study:

Dec 11, 2014
LWW Business Offices 
250 Waterloo Road
United Kingdom
Attn: Richard B. Johnston, Jr., MD Editor-in-Chief,      
Current Opinion in Pediatrics
Current Opinion in Pediatrics
Dear Dr Johnston,
In reference to the Shapiro article, "Update on persistent symptoms associated with Lyme disease" I would like to point out that the CDC criteria for positive serologic results require five out of ten IgG bands on the Western blot. In contrast, a single band criterion in China is sufficient to diagnose Lyme disease.(1)
The CDC's positive case definition for Lyme disease (five out of ten bands) was created for surveillance/reporting purposes only but is routinely responsible for misdiagnosis. A recent paper published in the International Journal of Molecular Sciences (2) identified the misdiagnosis of a sixteen year old (Patient #3who was hospitalized for pure psychiatric illnesses at a psychiatric hospital for seven weeks. The boy's Western blot identified only four out of five positive bands so the so-called "Lyme expert" mislabeled the teenager as a psychiatric patient and the boy was hospitalized without proper treatment of the infectious agents.
The correct diagnosis was made through the use of DNA sequencing positive for B. burgdorferi identifying the infectious agents in the patient's blood. I would like to point out that this patient failed a previous treatment following the recommended one-size-fits-all IDSA treatment guideline for Lyme disease; identifying persistent infection.
Shapiro's so-called expert opinion ("antimicrobial treatment is very effective") does not hold true in this case. I would like to call attention to Shapiro's additional misleading Lyme disease comments previously archived on the Internet:
Per the U.S. Food and Drug Administration website there appears to be four pages of patient complaints regarding faulty/misleading Lyme disease antibody testing and subsequent misdiagnosis.(3)
Current misleading serology is frequently responsible for delayed diagnosis and often used to deny insurance reimbursement. Yale University Schools of Medicine and of Public Health prefers to turn a blind eye to these facts as Shapiro has had a career long bias against persistent infection. Any lab test outside of serology threatens that bias.
Respectfully submitted,
Carl Tuttle                                                       
Hudson, NH
Attachment: Dr David J. Volkman's letter to Dr. Thomas Frieden, Director of the CDC.
[1] A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China
[2] DNA Sequencing Diagnosis of Off-Season Spirochetemia with Low Bacterial Density in Borrelia burgdorferi and Borrelia miyamotoi Infections
[Please be advised that there is an error in the paper; CORRECTION: "negative IgM and positive IgG for 4 bands" NOT 6 as verified by Dr Lantsman]
[3] MAUDE - Manufacturer and User Facility Device Experience

Transfusion-associated Anaplasma phagocytophilum infection in a pregnant patient

*Transfusion-associated /Anaplasma phagocytophilum/ 
infection in a pregnant patient with thalassemia trait: a
case report. *
Shields K, Cumming M, Rios J, Wong MT, Zwicker JI, Stramer
SL, Alonso CD.
/Transfusion/, online before print, 2014 Nov 11.

Human granulocytic anaplasmosis (HGA) is an acute
nonspecific febrile illness caused by the bacterium
/Anaplasma phagocytophilum/. Although usually transmitted
via tick bite, HGA may rarely also be acquired through
transfusion. HGA during pregnancy may pose significant
gestational risks due to altered maternal immune status and
the potential for perinatal transmission.

*Case Report*
A pregnant 34-year-old Massachusetts woman with
β-thalassemia trait was diagnosed at 32 weeks of gestation
with transfusion-associated HGA (TAHGA) after receiving nine
leukoreduced red blood cell transfusions. She was
successfully treated with rifampin therapy and gave birth to
a healthy child who tested negative for HGA after delivery.
An implicated blood donor was subsequently identified
through physician collaboration with the regional American
Red Cross and Massachusetts Department of Public Health.

This is the 11th reported case of HGA in pregnancy and is at
least the sixth known case in which leukoreduction did not
prevent TAHGA. As seen in this case, nonspecific
symptomatology of variable onset can impede diagnosis and
treatment. This may increase risk of poor outcomes in
maternal HGA patients. Cases of TAHGA, although currently
uncommon, may increase as the incidence of HGA in certain
parts of the country increases.

Heightened cross-institutional awareness of the potential
risk of TAHGA is warranted. Clinicians need to consider
transfusion-associated infections when fever occurs in a
transfusion recipient. This case provides additional
evidence that leukoreduction does not obviate risk of /A. 
phagocytophilum/ contamination of donated blood components.

Sunday, December 7, 2014

Fibromyalgia in Patients with Culture-Confirmed Lyme Disease

It looks from this study as though Lyme and Fibromyalgia are not highly correlated, suggesting that Lyme does not cause FM, as some have speculated.


Long-Term Assessment of Fibromyalgia in Patients with Culture-Confirmed Lyme Disease
Wormser GP, Weitzner E, McKenna D, Nadelman RB, Scavarda C, Farber S, Prakash P, Ash J, Nowakowski J.
Arthritis & Rheumatology, online first, 2014 Dec 2.


Background: Fibromyalgia occurs in 2% to 8% of the general population. One of the triggers may be Lyme disease.

Methods: Patients with culture-confirmed Lyme disease who originally presented with erythema migrans have been evaluated annually in a prospective study to determine their long-term outcome. In 2011-2013, subjects were evaluated for fibromyalgia by interview and tender point examination.

Results: 100 subjects were assessed, 52% of whom were male; the mean age was 64.9 years (median 64 years, range 42-86 years). The mean duration of follow-up was 15.4 years (median 16 years, range 11-20 years). At least twenty-four (24%) subjects had experienced a second episode of erythema migrans before the evaluation for fibromyalgia. One patient (1%, 95% C.I.: 0.025 to 5.4%) met criteria for fibromyalgia. The symptoms consistent with fibromyalgia began more than 19 years after Lyme disease was diagnosed.

Conclusions: Fibromyalgia was observed in only 1% of 100 patients with culture-confirmed early Lyme disease, a frequency consistent with that found for the general population.

Tick testing company

Here's a tip for getting ticks tested for Lyme and coinfections, cheap. Saw this on a listserv today, from a naturopath:

I have been using the tic-kits.  I do have a contact person if you would like to speak to someone about it.  I have tested a few ticks with these.  They test for borrelia, bartonella, anaplasma and ehrlichia.  The test is pretty inexpensive, at $45 for all 4 infections.  I have been using the lab who sold me the kits, Pharmasan labs, for many years.  I find them reliable.  

Friday, December 5, 2014

Military Lyme Support group

35 messages added in the last 7 days

Group Description

Military Lyme Support® was Founded in 2002 by a USAF Spouse who found it impossible to get adequate treatment for Lyme and Co-infections at her local Military Treatment Facility. This site is a source for information and emotional support for ALL Members of the Armed Forces: Veterans, Active Duty, Reserve, Family and Caregivers. 

To date, Lyme and other vector-borne diseases are often unrecognized, misdiagnosed, and untreated. Lyme is known as the "Great Imitator" and Doctors often prefer more familiar diagnoses like GWS, FM, CFS, XMRV, Lupus, Sjogrens, MS, RA, ALS, Autism, ADHD, or Mental Illness, just to name a few. This "cook-book" diagnostic approach leaves our Members with untreated, chronic diseases that can cause complete disability.

Military Lyme Support empowers our Members to get the cutting-edge treatment they need to overcome their illnesses via the ILADS Treatment Guidelines. Doctor referrals, VA, MTF and Tricare advice is also provided.

Please Note: You can test negative multiple times, and still be infected, as the currently available tests are grossly unreliable and inaccurate. If you have a rash, you are CDC positive for Lyme Disease...even if you test negative!

DISCLAIMER: All information posted on this site is the opinion of the author(s)alone and is provided for educational purposes only. It is not to be construed as medical advice regarding the treatment of any symptoms or disease. You should obtain the medical advice of your personal physician before pursuing any treatment mentioned here.